I am one woman who has struggled over the years to make sense of my journey. From abuse, through bitterness, from breast cancer and chronic disease to grace. Now I find myself mentoring other women with humor, wisdom, compassion and deep empathy.

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Thursday, July 25, 2013

Earlier this spring, I threw something of a tantrum on facebook. Someone out in cyperspace conceived this "game" in which they email or message a letter explaining the "rules" to the game. Then people start posting answers on facebook. The game they claim will raise breast cancer awareness...so that's why you should do it.

While I was going through chemo a facebook meme "what color is your bra?" started circulating. Of course those not privy to the rules were questioning "Why all the posts on colors?" Eventually it was said to promote breast cancer awareness.

But only to those who knew the rules of the game.

The next year we began to see things like..."on the floor next to the sofa" or "on the counter" Again, supposedly promoting breast cancer awareness...but only to those who knew the rules.

In 2012, it was a "going to China for 16 months" another supposed awareness game. The single flaw in all of this nonsense was...you had to be aware of the game. If you were not...you were left scratching your head, and aware of nothing.

They call it a game. I called it an insult.

They say they're raising beast cancer awareness. I say, enough with the awareness and DO something. It's not enough to be aware, if all you do is giggle and type in what color your underwear is. IF you call that "awareness" then sister, you've been ignoring the facts. Everyone should be aware of breast cancer symptoms because frankly, cancer doesn't play by the rules.

Me on chemo day with a burning steroid rash September 2010

About 1 in 8 U.S. women (just under 12%) will develop invasive breast cancer over the course of her lifetime.

An estimated 230,480 new cases of invasive breast cancer were expected to be diagnosed in women in the U.S., along with 57,650 new cases of non-invasive (in situ) breast cancer.

A man’s lifetime risk of breast cancer is about 1 in 1,000.

From 1999 to 2005, breast cancer incidence rates in the U.S. decreased by about 2% per year. The decrease was seen only in women aged 50 and older. One theory is that this decrease was partially due to the reduced use of hormone replacement therapy (HRT) by women after the results of a large study called the Women’s Health Initiative were published in 2002. These results suggested a connection between HRT and increased breast cancer risk.

About 39,520 women in the U.S. were expected to die from breast cancer, though death rates have been decreasing since 1990 — especially in women under 50. These decreases are thought to be the result of treatment advances, earlier detection through screening, and increased awareness.

For women in the U.S., breast cancer death rates are higher than those for any other cancer, besides lung cancer.

Besides skin cancer, breast cancer is the most commonly diagnosed cancer among American women. Just under 30% of cancers in women are breast cancers.

White women are slightly more likely to develop breast cancer than African-American women. However, in women under 45, breast cancer is more common in African-American women than white women. Overall, African-American women are more llkely to die of breast cancer. Asian, Hispanic, and Native-American women have a lower risk of developing and dying from breast cancer.

In 2011, there were more than 2.6 million breast cancer survivors in the US.

A woman’s risk of breast cancer approximately doubles if she has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer. About 15% of women who get breast cancer have a family member diagnosed with it.

About 5-10% of breast cancers can be linked to gene mutations (abnormal changes) inherited from one’s mother or father. Mutations of the BRCA1 and BRCA2 genes are the most common. Women with these mutations have up to an 80% risk of developing breast cancer during their lifetime, and they are more likely to be diagnosed at a younger age (before menopause). An increased ovarian cancer risk is also associated with these genetic mutations.

In men, about 1 in 10 breast cancers are believed to be due to BRCA2 mutations, and even fewer cases to BRCA1 mutations.

About 85% of breast cancers occur in women who have no family history of breast cancer. These occur due to genetic mutations that happen as a result of the aging process and life in general, rather than inherited mutations. NO FAMILY HISTORY!

As of Jan. 1, 2009, there were about 2,747,459 women alive in the United States with a history of breast cancer. This includes women being treated and women who are disease-free.

Beautiful young woman with reconstructed breasts

These games are demeaning to us who have battled through the disease. To have you diminish our experience to the color of your bra or the location of your purse, does nothing to raise awareness. WE raise your awareness. The Pink Warriors who walked through the fire to emerge as the Phoenix, WE are awareness. A woman told me "If this so called demeaning game encourages just one to get her mammogram, then it's worth it." Sadly, the game doesn't encourage you to get a mammogram. It asks for the color of your underwear...and they say it raises awareness. But only if you know the rules.

This is how you raise awareness.

Speak to your doctor about the signs of breast cancer. Do your own research.

Do self exams and get information on how to do them.

The next time you are at a gathering of women you care about...pass out the self exam information. Poll who is eligible to get a mammogram and remind them to do it. Check up on people who care about...HAVE you gotten YOUR mammogram? Schedule your exams together. One can wait in the waiting room while the other one is done. Should one of you hear scary news...you have a buddy out there to come in and hold your hand through ultrasounds and biopsies.

Keep talking about it! Have YOU gotten YOUR mammogram?

I was also told by a friend that she hadn't gotten her exams done because they were "uncomforable". Sadly, breast cancer is not comfortable either. I had exams done every calendar year and my cancer was caught by mammogram. Unfortunately, my cancer was a sneaky attack kind, deep in the breast tissue. Doctors tell me it was probably there for 2 years before it was large enough to be seen on mammogram. It was already in nearby lymph nodes. It would never have been felt. The uncomfortable mammogram may have saved my life. By the time I could have felt this tumor, it would have spread beyond nearby lymph nodes into distant nodes and organs...Metastatic breast cancer. Stage IV. Incurable.

Thursday, July 18, 2013

Tuesday
morning, my birthday - was difficult. I
was getting dressed, putting on makeup to give me the confidence to speak to a
plastic surgeon. Let me tell you that is intimidating...knowing how often they
look at perfect bodies. In the process I found that sometime between Sunday and
Tuesday I had lost nearly all the eyelashes on my right eye. It stinks! I can
draw a fake eyebrow but I still have eyebrows. They are lighter but quite
adequate.

But the
lashes...I have like 10 lashes total left. The left eye has lashes missing in
spots. There are blank spots but when I
add mascara you see the blank areas very clearly. Ever tried to put mascara on
one eyelash? It doesn't happen. It was deflating. I felt like everyone at
the hospital was looking at me and wondering “what is wrong with her eye!”

We loved Dr. Puckett. I had been told by
some of his patients they loved him.
Then others told me was kind of serious and reserved. Totally not that way with me. The resident noted it was my birthday and
told me it was also Dr. Puckett’s birthday.
He came in and I sang Happy Birthday to him, and told him it was mine
too. In seconds, we were laughing,
joking with each other and I thought he was pretty spectacular.

C. Linwood Puckett

His resident
was very good too, so cute and that was awful. Picture the cute man picking up
your boob cupping it and lifting it up to wherever it should sit. (Apparently laying across the tummy isn't the desired
position.) lmbo But it was uncomfortable to have a Matthew McConaughey lookalike
playing with your boobs with icy hands. Of course the girls perked up...the
betrayers. I told him his hands were freezing – like this was the reason! He
agreed it was cold.. thank goodness.

He was clear.
He explained Dr. Pickett does the surgery I want - implants. He went over the
other options tummy flaps, back flaps...I told him I wasn't interested for
a couple reasons. It was a much more painful recovery and longer. You have
to be in ICU for 2 days to make sure the flaps blood supply stay intact. But also I said I have to lose weight again
to lose more estrogen in my belly. And I lost boob bulk from losing 70 lbs. I don’t
want to do those surgeries and lose my new boobs in fat loss. He agreed that
could certainly happen.

The other
reason...I have gone through pain, nausea, vomiting and the two - three
surgeries. I want, no I DESERVE perky
boobs as my reward for getting through this.
The resident’s name was Dr. Daniel. He tried to not chuckle but I told
him he could. So he did and he told me that it was just as valid as any other
reasons

So what happens
is during the reconstruction, they place the spacers behind the muscle walls.
Then they inflate the spacer with a small port (I will have so many freaking
ports in my body.) using saline at that point.

I want a c cup
at finish. So every week they will pump up the saline a bit more until I get to
a c cup. Then we wait for 4 months… FOUR months. You decide in that time if you
like the size...are they placed well. Are they symetrical? And your body takes
the time to adapt to the change in anatomy. After the FOUR months, you go in an
outpatient surgery to have the spacers pulled out and silicon implants are
replaced. Then after you recover it sounds like you are done. That was the
good.

Now the not
so good.

I had one
lymph node biopsied and it was positive. I don’t understand the role of chemo
if not to kill cancer cells. So isn't it feasible that since it was only a
few cells that chemo could have eaten the whole cluster? I know you aren't
qualified to answer.

So I learned
that at my surgery they will most likely do an axillary dissection and send
the whole section of lymph nodes off to be checked. It will take 5 days to
get the results from the pathology. What the plastic surgeon prefers to do is to NOT to do
immediate reconstruction at that time.

For the BEST results he wants to wait and get the axillary lymph results. If
I don’t need radiation then we would schedule a new surgery about 8 weeks
later to start the reconstruction. :(

However under that same plan...with no
tissue stretcher in place, if I do
need radiation, he will not touch me until I am a YEAR post radiation!!!!! I held
it together there but I was dying inside. They don’t have experience with my oncologist
or surgery doctors. Dr Puckett is an University
physician so he’s only used to University doctors.

I asked about
going ahead and placing the expanders.
Going ahead and doing a little expansion to give me Something for my
clothes. He said we could do that. But he said often the radiologist will request
they be removed for radiation. :(( sigh He said there was also the concern of
how my skin would react to radiation. It could get hard and encapsulate the
expander, making further expansion difficult.

If he places the expander, he
can pump me up a bit, let me do radiation. But I would still have to wait an
entire YEAR for the final expansions and implant surgery AFTER the four month
settling time. He said there was the risk I could wind up with a hard knarly
boob...not the best results.

So I talked
it over with Kel. He is the only one besides doctors and nurses who see my
boobs..altho right now that seems like a few hundred people. My final desire
is to wear pretty bras and look normal in clothes. If I have a hard gnarly
boob...undressed won’t bother me. So K and I decided that we were okay
with the less than the plastic surgeon’s ideal results.

I called
Dr. Bryer, the radiation oncologist. HE said he has never had to ask for a
spacer to be removed to complete radiation. He's never asked someone to go
for wait for reconstruction. I asked about encapsulation. (An inflexible
pocket around the expander or implant). He told me there is the occasional
issue but to keep in mind women who do not have radiation also have had the
complication. It was up to DNA and skin type. IF I had to have radiation it
would be the arm pit and skin, not deep into tissue like with a lumpectomy.

So it is
crucial that I not have radiation. Please pray with me it will not be needed.
However we have decided that I have will have the reconstruction and
expanders placed. I will believe in faith that radiation won't be required.
If it’s God's plan to me to have it anyway...well I will have a little
boobies made of saline for an entire freakin’ year before I get the real
thing. But it will be something!

I read a case
of a woman who had not done a reconstruction. I don't know why. But she was
extremely anal about being seen without her "boobs" on. One night
while on a business trip the fire alarm went off at her motel. She threw on
her clothes and ran out to the parking lot. She looked around and everyone
else was in pjs and robes. She realized it had been more important to be seen
with her boobs than dying in a fire. She got a reconstruction.

I told K I
didn't need perfect looking boobs. I just needed to feel womanly in a bra and
in a dress. Mom goes without her boobs at home. But if she knows company is
coming she’s hitting the bedroom to put them on. I don't want to have to
think about them that much.

So I have all
that to think about.

The day got worse when we got home.
Our sweet, old Pomeranian Bandit, was in respiratory distress. He had been struggling for 2 years, having
the occasional seizure that was awful to see.
He had been on prednisone for serious skin allergies over the years
and we knew that would shorten his life.
He was a pretty special, our old pomeranian we had him since he
was 8 weeks old. He died that very night. Yes, the night of my
birthday. I don’t know if we will ever celebrate anything again. That
was wretched. He died in KJ's arms. We didn't know he was that
close to death, but knew he was not doing well. We made arrangements
for the vet to put him down and then Bandit acted a little perkier so we
thought maybe we made a hasty decision. But he quickly decompensated
and died before the vet could arrive. It was awful to watch, and Bandit
was more KJ's personal companion than mine....KJ sobbed. I cried and
I'm sad, but KJ's heart broke.

It’s been
such an awful week. I'm weepy and sad. It doesn't take much to get me crying.
Becky sent me a picture mail of mom sitting up in her hospital bed and
grinning. Yep I lost it!

Sally - well
that's really crappy about the lymph nodes....that’s scary. Praying
you don't need radiation. I saw this today and thought this might
give you a laugh. Boob hats for breast
cancer awareness.

Rosey - that
is crazy. I have thought about baking boob cakes when I can get back to ladies
bible study. Wonder how they'd like wearing boob hats too. lol

Tricia - Continuing
to pray about the things you stated...and I just have to tell you, the part
about the eyelashes really got to me. I'm so sorry for you about
that. There are hats and wigs and things for our heads, but
eyelashes? That's just not right. Just my opinion.

Tuesday, July 16, 2013

A chilly night settled in the Smokey Mountains as the girls prepared
to sleep. They changed their clothes,
giggled, rolled their eyes at each other and made an exaggerated effort to
secure all the zippers of their tent.
They had witnessed firsthand that skunks could squeeze into small
openings in the doorways of a tent, effectively evacuating the human residents in
record times. More than once they had
watched panicked occupants shove and trip their way out of the tent where a skunk
had entered. They didn't see reason to
risk it.

The chill caused the girls to crawl deeper into their
sleeping bags as they arranged their various pillows. As always there was a pillow to rest the
head, and another to hug. Stuffing the
“hugging” pillow into the sleeping bag caused much giggles and grunts from
both sides of the tent as they each laughed at the sight of the other.

They were the two “older girls” of the ripe old ages of 11 and 14. But their status as elder had earned them a
tent of their own, while the younger girls had to sleep in the overhead
compartment of the camper atop the back of the truck. They were grateful for the space to stretch
out, even if it did require gymnastics to arrange their bedding “just so.”

They flipped off the flashlight and snuggled deeper as their
minds floated into that soft, fluffy state of sleep. They entertained dreams of being pioneers in
a new wilderness; a small wood cabin…with running water, Myrna wanted running
water in her cabin. In a dream you get
to choose.

courtesy picstopin.com

They awoke with a startle!

“Lynne! Did you hear
that?” Myrna whispered to her sister. A
few grunts came from Lynne’s side.

“HA! Ha! Go!
Git!” someone was yelling or trying to be heard over a metallic
clanging. “Ya! Ga!
Go! Put that down!”

Lynne was fully awake now, and wiggling out of her sleeping bag. Myrna was quick behind her. “What do you think is going on?” Lynne
hissed. For some reason, they both felt
their presence should remain unknown for the moment. They crawled to the door of the tent, and
Myrna started to unzip the entry.

Lynne stopped her hand, “Wait! Check to
make sure there’s no skunks’ rolling in the dirt in front of the door!” Myrna nodded.
Around the mountains camp sites, they had seen the skunks rolling and
flopping in the dusty paths.

Slowly they rose up to the screened portion of their tent. What they saw befuddled them…

courtesy WALLMAY

Their father stood in the shaft of moonlight, naked but for
a pair of white bvd’s. He stood hopping
from one foot to the other, a frying pan in one hand with the metal spoon in
the other. He alternately hopped and
yelled or stopped to clang the pan.

Myrna looked at Lynne with confusion. They glanced at their father in the clearing
and sank to their heels. “We must be
dreaming Lynne” Myrna said crawling back to her sleeping bag. Shrugging, they quickly fell back to sleep.

The next morning, Lynne mentioned to mother, “Myrna and I had the weirdest
dreams last night of dad dancing around with a frying pan wearing only his
underwear.”

Father choked on his pancake and mother laughed aloud,
spewing hers back onto her plate. She
continued to laugh as dad explained ruefully, “What you did NOT see what the
big brown bear standing on the other side of the camp with our ice chest held
high under his arm pit! He planned to
take off with our milk, eggs and meat and I had no intention of letting it go
quietly. I did however keep close to the
camper in case he took exception to my noisy dancing.

courtesy 123RF

The girls eyes were wide when they realized that meant there
had been a bear just yards from their tent.
They shuddered as they ate breakfast.
Myrna grinned…”This is going to be an awesome story to tell of dad
dancing in the moonlight in his underwear!”

Wednesday, July 10, 2013

The two boys walked home from a friend’s house, hurrying as
they tried to beat the setting sun. They
tromped through the underbrush of the back woods, hoping to get into the
chicken yard before mom and dad realized they had not started their chores.

The older brother pushed the tree limbs and held them aside
as the younger brother followed in his footsteps. They both watched their footing as they
stepped over rotting logs into decaying leaves of the forest. The air was still and thick with the scent of
rotting underbrush.

The setting sun had turned the shade into long fingers of
shadows, changing the familiar into frightening. They were only a half mile from home when
they heard the sound.

“Whooooo. Whoo
Whoo” The younger brother stopped still
in his tracks. “Russ! What was that? Who said that?”

The older brother, glanced at his kid brother, his chest puffed with the excess
knowledge of a grade school boy…”Aww Ed, it’s just an old hoot owl. Keep going or mom will tar our pants.”

Russ and Ed kept walking toward the home, but the call of the hoot owl was more
than a regular boy’s curiosity could withstand.
They followed the call until they
located the owl sitting about 20 feet above the forest floor in an old withered
tree. They walked with care around the
tree, their eyes upon the old owl as they circled.

“Russ. Do ya see
him? His eyes follow us no matter where
we are.”

Young Russell was watching the owl intent with
curiosity. “Yeah Ed, I’m watching
him. His eyes follow us all the way around
the tree.”

Ed leaned over to his older brother and hissed, “How does he do that? It ain’t natural”.

Russell nodded, taking Ed’s arm as they continued to circle around the
tree. “Let’s try to catch him turning
his head round.”

In the dusky hour they continued to circle the tree, their eyes straining to
watch the owl.

That’s where my grandpa found them a half hour after they were supposed to be
home for dinner. Watching the boys
continue to circle around and around the tree, he finally stopped them to ask what
in “Sam’s hill” they were doing.

Great seriousness had deepened their voices as Ed explained, “Pa, it’s a hoot
owl!”

Russ continued, “So we've been walking around and around trying to catch him spinnin' his head back to the front. He ain't done it so we've been waitin' for his head
to unscrew. It’s been an hour and that ain’t happened neither!”

Tuesday, July 2, 2013

I preface this family story with a warning. It’s gross.
I mean my dad WON the “gross out” contest with this story of his. While it made us laugh, the thought still
makes me want to gag.

courtesy

It was a large family reunion. Uncles,
Aunts, cousins they all milled together around the old farmhouse. It was unusual to have a family gather this
large without there being a death and a burial.
But some crazy aunt got a wild hair and thought…Let’s not wait til
someone dies ‘afore we gather to gather.

So it was there, that Russell found great fun playing and
chasing after cousins. They romped and
played around the farm, hide and seek, tag, marbles…it was the best fun a 3
year old could have…tagging after his older cousins.

He had to tolerate the tight hugs and squeezes of various
aunts as they caught him zipping past the “eatin’ tables”. One would snag him with the request…”Come ‘ere
ya varmint, and give yer aunt Lily Mae a
hug and kiss.”

Russell objected to the wet kisses but one glance at his mom and her frown
combined with the eyebrow thing she did told him, he’d best submit to the
torture. Complying shortened the
process, and off he was let go to run after another cousin. Before long he found himself abandoned with
only his dog as a companion. The older
kids were tired of “the baby” running behind them.

He was hot, sweaty and reeked of that hot boy in the sun
scent. He was thirsty too, so he
wondered up to the eatin’ tables for a cup of the cold well water.

He had climbed up to the bucket, reaching for the ladle when
Grandma Ina noticed him and called out…

“Esther, Russ is climbing for some water. “
She called attention to Russell. “What’s
that he’s got dripping off his chin?”

Esther looked over at Russ and saw he indeed had dark juices dripping off his
chin. She grabbed a rag and was
proceeding to clean up his face. “Come
here, you scamp! What’s that you’re
chewing on?”

Russell squirmed away from her grasp as he answered “’napes momma”.

Esther glanced around at the women gathered there. It was early in the summer for grapes to be
harvested. So she asked “Russell, where
did you get the grapes.”